Tag Archives: Congress

U.S. Department of Veterans Affairs Requests Increase in HCV Funding

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By: Marcus J. Hopkins, Blogger

Cover of the FY 2018 Budget Submission

Source: U.S. Department of Veterans Affairs

The United States Department of Veterans Affairs (VA) has laid out plans to continue their open treatment policy for eligible veterans living with Hepatitis C (HCV) into 2019 and beyond. The budget request sent to Congress – Fiscal Year (FY) 2018 and FY 2019 Advance Appropriations – highlights some of the successes the program has achieved in delivering comprehensive HCV treatment using Direct Acting Agents (DAAs) to cure HCV, as well as puts forth a request for an additional $751 million in funding specifically for HCV treatment. This is a $151.2 million increase from the 2018 Advance Appropriations requested in the previous year’s document.

The VA began offering treatment to all veterans in its health system regardless of their disease stage in March 2016 (Kime, 2016), a major step forward for the program, as the high cost of newer DAA drugs have proven prohibitive to decisively moving to eradicate HCV within other government healthcare programs enrollees. This also allowed veterans who were “…waiting on an appointment for community care through the Choice program [to] turn to their local VA facility for this treatment or elect to continue to receive treatment through Choice.” The Veterans Choice Program – introduced in 2015 – is a temporary benefit that allows veterans who were enrolled in VA health care prior to August 01, 2014, or who are eligible to enroll as a recently discharged combat veteran, to receive care in their communities, rather than waiting for a VA appointment or traveling to a VA facility (Peterson, 2015).

In the document recently sent to Congress, the VA also touted some of the successes of the program:

  • As of December 2016, 78.8% of Veterans in care in the 1945-1965 Birth Cohort – those most likely to have HCV in the U.S. – were screened for HCV, and the VA estimates that an additional 15,500 veterans in VA care remain undiagnosed.
  • From January 2014 through March 2017, the VA has treated over 84,000 veterans with cure rates over 90%.
  • As of February 2017, 61,000 veterans diagnosed with HCV were potentially eligible for treatment.
  • The VA estimates that approximately 80% of all veterans with HCV enrolled in VA care will be treated by 2020. Veterans remaining in the untreated pool at that time are estimated to be more difficult to engage in care due to issues like homelessness, mental health, and substance use comorbidities, or may be uninterested or unwilling to receive HCV treatment.
  • The number of total national HCV treatments increased from approximately 2,800/year in 2011-2013, to over 30,000 in 2016. This growth reflects the additional demand for HCV treatment with DAAs, beginning the second quarter of 2014 through the present.

The VA’s approach to treating veterans is a success story that CAN be repeated by other government-run healthcare programs, but doing so will require state and Federal governments to exponentially increase funding in order to eradicate HCV within the populations most likely to become infected. The Centers for Disease Control and Prevention (CDC) estimates that the vast majority of new HCV infections is a result of Injection Drug Use (IDU) among rural and suburban white men and women aged 18-35 (Dwyer, 2017). The populations are likely to also have lower incomes that may make them eligible for coverage under state Medicaid programs (in Medicaid Expansion states).

The full VA Budget Request can be viewed at the following link:

Department of Veterans Affairs – FY 2018 and FY 2019 Advance Appropriations



Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.


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Partisan Poison Pills for 2017

By: Marcus J. Hopkins, Blogger

Each year, the House Appropriations Committee – specifically, the Subcommittee for Labor, Health, and Human Services (LHHS) – releases a funding bill for the coming Fiscal Year (FY). In what is very likely highly partisan politics on the part of Congressional Republicans during a highly volatile election year, several hefty cuts and prohibitions were introduced into the spending bill which will likely – and in this writer’s opinion, hopefully – result in a veto from the President.

House Appropriations Chairman, Hal Rogers (R-KY), stated the following:

This is the 12th and final Appropriations bill to be considered by the Committee this year. It follows the responsible lead of the legislation before it –  investing in proven, effective programs, rolling back over‑regulation and overreach by the Administration that kills American jobs, and cutting spending to save hard‑earned taxpayer dollars.

Pill with the words, Poison Pill

Photo Source: Venitism

Anyone familiar with the coded language of politics knows that this is partisan fodder to try and bolster so-called “Conservative” bona fides during an election year, and the Republicans on this subcommittee pulled out all the stops ensuring that American families and individuals pay the price for their political pandering.

The final version of the bill, which has yet to go to the full House, contains the following (taken from the Appropriations site):

  • Centers for Disease Control and Prevention (CDC) – $90 million ($20m above 2016) to expand efforts to combat prescription drug abuse (a positive step, in HEAL Blog’s view). The bill also continues the “…longstanding prohibition against using federal funds to advocate or promote gun control,” which essentially forbids the CDC from labeling firearms and gun violence a public health crisis without risking severe cuts;
  • Substance Abuse and Mental Health Services Administration (SAMHSA) – $581 million to address opioid and heroin abuse, including $500m for a first-ever comprehensive state grant program that will address the opioid epidemic nationwide (another positive step), but “…maintains a prohibition on federal funds for the purchase of syringes or sterile needles, but allows communities with rapid increases in cases of HIV and Hepatitis to access federal funds for other activities, including substance use counseling and treatment referrals” (a halfway step that still ignores and fails to fund “proven” and “effective” harm reduction programs);
  • Health Resources and Services Administration (HRSA) – “Saves” taxpayers nearly $300m by eliminating all funding for the “controversial” Family Planning Program, a program that has existed and been funded since 1970 that provides contraceptive care to avert unintended pregnancies, screening for sexually transmitted diseases and infections, HIV testing, and cervical cancer screenings. These programs provide voluntary family planning information and services for their clients based on their ability to pay (on a sliding scale), and the stripping of these funds is likely to have a disproportionate impact upon lower income Americans and minorities;
  • Centers for Medicare and Medicaid Services (CMS) – Strips $576m in funds from FY16, and comes in a $1 billion below the President’s budget request. “The bill does not include additional funding to implement ObamaCare programs, and prohibits funds for the Center for Consumer Information and Insurance Oversight and Navigators programs,” essentially leaving consumers to fly blind in order to appease the anti-Affordable Care Act Republican party platform (which the chairman cannot even call by its proper name).

If it seems like anything is missing, you’ll notice from that there is no new funding for Viral Hepatitis, despite numerous Congressional hearings where representatives bemoaned the high prices of Hepatitis C (HCV) drugs and wrung their hands about the bleak prospect of exponential increases in new Hepatitis B (HBV) and HCV infections, largely related to the very same opioid and heroin abuse they managed to fund.

This bill, should it make it out of the House and Senate, is yet another example of the now-all-too-familiar dance of “Two Steps Forward; Three Steps Back” that has occurred for the past six years of Republican control of Congress. While some improvements are made, the vast majority of proposals tend to result in cuts that are sold as “cost saving” and sacrifice “controversial” programs (controversial only to the 1/3 or less of American constituents) that should leave taxpayers feeling like they’ve be presented with false advertising. Hopefully, some of these…unique proposals will be removed before a final bill is sent to the President for approval, but in an election year – particularly the one of the length and actual controversy we’re currently forced to endure – virtually anything can, and usually does, happen.

Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.

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Bayh-Dole Threat Sits Idle

By: Marcus J. Hopkins, Blogger

In January 2016, Rep. Lloyd Doggett (D-Texas) led a group of over 50 House Democrats in asking the Department of Health and Human Services (HHS) to open the door to using “march-in rights” to break patents whenever drug manufacturers set prices for their drugs prohibitively high. HHS Secretary Sylvia Matthews Burwell has, once again, maintained the HHS position that this simply isn’t going to happen.

If the concept of “march-in rights” seems confusing, that’s because it is. Essentially, the “march-in rights” provision of the Bayh-Dole Act allows the government to essentially ignore patent rights if government funding has been used in the creation of the patented product, and then, only if one of four criteria are met: (1) the right-holder “has not taken, or is not expected to take within a reasonable time, effective steps to achieve practical application of the subject invention in the field of use;” (2) the right-holder has not reasonably satisfied “health or safety needs;” (3) the right-holder has not met public use requirements specified by federal regulations; or (4) the right-holder has not satisfied the Bayh-Dole requirements to give certain preferences to U.S. industry.

Image of a stethoscope wrapped around a $20 bill , laying next to an open medication bottle

Affordable Healthcare

The Bayh-Dole Act came about in response to the economic malaise of the 1970s and to the overly complicated and incredibly bureaucratic process of being granted a patent after using Federal resources to conduct research and development. After World War II, President Roosevelt was dogged in his pursuits of scientific breakthroughs and achievements, and funding was heavily stacked in favor of leading the world in those breakthroughs. However, prior to the Bayh-Dole Act, the government had acquired around 28,000 patents, but only 5% of them were used in commercial applications (General Accounting Office, 1998). The Act was supposed to solve those problems.

The unfortunate consequence of this Act has been that private entities can use endless government funds to create products that are intended to benefit the general public, turn around to file a private patent on said product, and essentially charge whatever they please for public use of said product. As a card-carrying Socialist, myself, I find this most perverse – that taxpayer-funded products should then be sold back to the taxpayers whose money already paid for it at a potentially exorbitant price is, to my way of thinking, capitalism at its absolute worst.

Particularly in the field of medicine, this practice has led to an explosion in two things: fast development in pursuit of higher profits and exponential increases in the price of usage. We went from a system in which children were given vaccines for childhood illnesses for free at public schools, to one in which parents are required to have their children vaccinated on their own dime, even though their dimes – along with everyone else’s – have already paid for those vaccinations.

As of January 2015, no Federal agency has exercised its march-in rights. To date, I believe that is still the case. This marks the sixth petition to the HHS to exercise its march-in rights to address the ever-increase pricing issues related to “specialty” drugs – drugs marketed to specifically address only a single disease or a single aspect of a disease – two of which regarded the use of Norvir (ritonavir). The first came in 2004 after the maker of Norvir, Abbott Laboratories (now AbbVie), raised the price of their drug by roughly 400% in the U.S…but, nowhere else in the world.

That’s right: nowhere else in the world does Norvir cost as much as it does in the U.S. Globally, the wholesale cost of Norvir is between $0.07 and $2.20 a day (Drugs[dot]com, n.d.); in the U.S., that cost is about $9.20 up to $55.00 per day, depending on the dose (International Drug Price Indicator Guide, 2014).

The HHS position on price-related march-in rights has been to essentially say, “It’s Congress’ job to deal with drug prices; not ours.” Sadly, I’m not certain that Congress may ever been in a position where that can be effectively done. Although there is certainly disagreement over the degree to which the Pharmaceutical Research and Manufacturers of America (PhRMA) influences Congressional action related to drug prices, there is little disagreement that the influence is there.

PhRMA is dogged in protecting its right to charge whatever it wants for product that they insist were made using their ingenuity alone, regardless of whose money was used in the making. They’re more than willing to receive billions of dollars in federal funds to create products that are meant to heal the public, but they’re less willing to charge reasonable prices for those taxpayer-funded products. Any suggestion that this practice is either unsavory or unethical receives the “This isn’t Communist Russia!” treatment, so favored by vulture capitalists. Furthermore, any movement to address the issue of drug pricing is met with threats of leaving the country to do business in “more hospitable” climes – basically, extortion – and no member of Congress wants to be seen as a “job killer.”

In the case of drug prices, however, something clearly must be done, whether or not the drug manufacturers like it, and if legislative efforts aren’t going to happen, maybe it’s time to march-in on these territories and start putting the taxpayers’ dollars to work FOR them, rather than against them.



Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.

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Trade Secrecy and Public Payers

By: Marcus J. Hopkins, Blogger

This past month, I attended the Hepatitis Appropriates Partnership (HAP) and National Viral Hepatitis Roundtable (NVHR) meeting, as well as the National Alliance of State and Territorial AIDS Directors (NASTAD) Technical Assistance (TA) conference in Washington, D.C. To both of these events, I went as a representative of the Community Access National Network (CANN), but I also went as “myself.”

Going as “myself” is a complicated task, no matter the location, as I have several informational gaps in my knowledge about the finer points of crafting policy, and going to these conferences often leaves me feeling like something of a fraud. I haven’t finished my education (and at this point, don’t really have the time to do so), and even then, I wasn’t going to school to study public policy – I was going for Health Communication in an effort to better increase my ability to adequately assist lower- and middle- income people living in Appalachia to access comprehensive healthcare for HIV.

So, when it comes to these meetings, I often find myself nodding along and saying, “Absolutely,” a lot, even when I have no idea what the heck the person is talking about; in the performing arts world, we call this, “Fake It, Until You Make It.” And so, I often leave sessions and conferences with more questions than when I entered, because in order to keep up, I have to almost immediately figure out what’s going on around me.

Perhaps, that is why I was tapped to serve in my capacity with CANN – I’m not just a very good writer (if I do say so, myself), I am also a patient. As such, I can safely say that, despite being a very knowledgeable and informed patient, I still have several information gaps – like many patients. There are some very basic pieces of information that I, as both a patient and a consumer, feel that I should know – that everyone should know – so that I can better advocate for myself.

The one thing that stuck out to me more than anything else during these meetings (in the context of “myself”) was that there is virtually no transparency when it comes to the world of pharmaceutical pricing. As an advocate for open governance, I’ve always been a firm believer that if my tax dollars are being used to pay for something, I have a right to know how they’re being used. This is the basic tenet of public governance –“How’s the money being spent, and how much of it is being spent on what?”

This is where things become interesting. As I reported in the last HEAL Blog, “Behind the Scenes at Hepatitis, Inc.,” certain laws prevent the Centers for Medicare and Medicaid Services (CMS) from discovering the actual price being paid by the 59 AIDS Drugs Assistance Program (ADAP) and 56 Medicaid programs for Hepatitis C (HCV) medications. Furthermore, beyond a single Federal statute, each state may or may not have its own statute that prevents those programs from discussing with any other state the price they’re paying for drugs.

Basically, we have a system in which private companies (in this case, pharmaceutical companies) have the right to enter into negotiations with both privately and publicly funded payers and enter into pricing and rebate agreements with them in total secret, and all of this is legally protected as a Trade Secret, making that information not only invisible to the public, but invisible between the states. This is, according to Pratap Khedar, a principal at pharma marketing consultancy ZS Associates, “…a very efficient free market…between the insurance company and the pharma company” (Herper, 2012).

For the private insurance companies, this seems fair – they are two privately held entities who can and should be able to enter into bargaining proceedings as manufacturer and buyer. This is the cornerstone of the free market – “I have a good to sell; let’s negotiate on the price.” These entities absolutely should be allowed to keep the amount that they pay per unit confidential.

It is, however, with the public payer/private manufacturer secrecy that I have a serious problem. With any other government office, whenever a deal is struck between a private company and the government, the amount the government has agreed to pay, as well as a breakdown of that agreement, are generally subject to public records and Freedom of Information Act (FOIA) requests. With pharmaceutical companies, however, this is not the case.

“Congress has created a system so that even the states, which buy tens of millions of dollars worth of these drugs, have no idea what we pay on a per-unit basis,” said the Democratic former Montana Govenor, Brian Schweitzer (Cross, 2011).

“Actually, Schwierzer does know what the state pays – but, before acquiring the information last summer, had to have his chief counsel sign a written agreement not to disclose it publicly,” reported Mike Dennison of the Billings Gazette (Cross).

Schweitzer came across the information in the summer of 2010, when he was attempting to compare what Montana’s Medicaid program was paying for drugs compared to the cost in Canada (Cross), but discovered in the process that, while he, as the governor of the state of Montana, could access that information, he could not share what his state’s Medicaid was paying at a price-per-unit level – he could only give very broad estimates based on Wholesale Acquisition Costs (WACs) or Acquisition Wholesale Prices (AWPs).

For those readers who are unfamiliar with those two measures, either the AWP, the WAC, or occasionally the Direct Price (DIRP) is the price that is published for the public. Whenever someone says, “Sovaldi (Gilead) costs $87,000 for twelve weeks of treatment,” they are quoting one of those numbers.

What most consumers – particularly those with lower incomes, knowledge levels, healthcare knowledge, or interest in the information – don’t know or understand is that those prices are practically meaningless, as virtually no payer (insurers, private or public) actually ever pays those prices. Instead, they negotiate with pharmaceutical companies and drug manufacturers in order to pay a lower, undisclosed amount, achieving those low numbers either by direct pricing agreements, or by entering into rebate programs.

Rebate programs in the pharmaceutical world operate much as they do in the commercial retail world – the payer pays the pharmacy to fill the prescription, the pharmacy fills the prescription and reports back to the payer, the payer submits a rebate form to the manufacturer, the manufacturer receives the rebate forms and cuts a check for an undisclosed dollar amount, and that check is sent back to the payer.

With both the agreements and the rebate programs, the idea is volume – those states/payers who pay to fill more prescriptions than other states/payers are more likely to receive much more generous pricing and rebate arrangements. For national private insurance companies and pharmacies (Wal-Greens and CVS, for example), this is a great deal, as they can pay to fill several thousands or millions of prescriptions each month.

The rub comes with public payer options, like Medicaid and Ryan White, Part B (ADAP). Ostensibly, this type of closed loop free market should benefit them, as well; instead, the states who are in the direst circumstances – primarily those states that are largely rural, an Appalachian state, are in the South, or are lower-income – end up with the worst pricing arrangements.

Take the example of Stribild (Gilead):

When I lived in California, my ADAP coverage lapse, and there was a period of time where I had to wait for my application to be approved for the new year, during which I ran out of medications. I asked my AIDS Healthcare Foundation (AHF) pharmacy if I could purchase the pills from them, individually, out of pocket, and they agreed to do so at the price of $68 per pill.

So, I did the math:

  • $68/pill x 30 pills/bottle = $2,040/bottle
  • $2,040/bottle x 12 months/year = $24, 480/year

When I first moved to West Virginia, I had to apply for ADAP in my new state. In the application process, they inquire as to how much my current prescriptions cost, which led me to ask the pharmacy for the cost of my prescriptions. After needling them for over an hour, they finally gave me an estimated price of $37,000/year.

Again, I did the math:

  • $37,000/year / 12 months/year = $3,083.33/bottle
  • $3,083.33/bottle / 30 pills/bottle = $102.78/pill.

Did you catch that trick?

The state of California, whose economy is comparable to that of the entire nation of Brazil, pays $68 per unit, while West Virginia, whose economy is comparable to that of the landlocked Eastern European nation of Belarus (best known for its Stalinist architecture and the KGB Headquarters overlooking Independence Square), pays an estimated $102.78/pill (Tippett, 2015).

“But, this,” one might say, “is the nature of business. States who don’t purchase as much of any good will ultimately end up paying more that those states who do.”

This argument does and should hold true for private payers; for public payers, however – particularly Federally-funded public payers – this should never be the case.

Yet again, we are faced with the dual realities of an insurance-based healthcare market and Federally-funded, but state-administered public health programs. The richest states are more likely to benefit, while the poorest states end up paying a higher price for access to treatments than those who live in more urban areas. In a nation where all citizens in all fifty states and the outlying territories are supposed to have equal access and opportunity, there is little parity.

So, what does this mean for poor states’ Medicaid and ADAP budgets? Basically, they get screwed, because, even though they ostensibly have fewer overall clients to serve, they end up paying more for medications than their richer counterparts.

Why I bring up the public payer issue relates to a recent initiative sponsored by AHF in the state of Ohio that would require Ohio agencies and publicly-funded entities from buying prescription drugs at higher prices than what the U.S. Department of Veterans Affairs pays (Associated Press, 2015).

The way this legislation is worded leads voters to think, “Well, the VA must be getting a great price on these drugs! We wouldn’t skimp on healthcare for our nation’s veterans! THIS IS AMERICA!”

As such, it is likely to achieve the adequate number of signatures to force a vote in the Ohio legislature, and potentially go directly to voters if the legislative body fails to act within four months.

The reality, however, is that, because payers cannot legally reveal, either to the public or to each other, how much they actually pay for medications, certain entities may, in fact, pay less than the VA through their own negotiations. This means that the initiative could, in effect, mean that Medicaid and OhDAP could be paying more, if they’re forced to pay the VA price.

The sponsors of the initiative, AHF and its president Michael Weinstein, fully know that this is the case, which makes this proposal a rather open attempt to force a single pharmaceutical company – Gilead – to reduce its drug prices, as well as to enter into pricing negotiations with ADAP programs.

Gilead, the maker of the popular drugs Stribild (HIV), Truvada (HIV, PrEP), Sovaldi, and Harvoni, have weathered a fair amount of criticism in the last few years, mostly in relation to its drug pricing practices. While they have, in the past, attempted to allay the fears of lower-income patients who were denied coverage, the company went forward with a plan to strictly tighten the qualifying requirements for their HCV Patient Assistance Program (PAP), Support Path, in July of this year. This was largely in response to the continued, yet unofficial, practice by insurance companies of sending their client to Support Path to get their medications for free, straight from Gilead, after agreeing to reduced prices and rebates.

What frustrates me the most about this entire situation is my belief that every publicly-funded entity should be held accountable for how our money is spent, up to and including the specific prices these organizations pay for goods and services. Instead, pharmaceutical companies with virtually limitless resources, all but write Federal and state Trade Secrets statutes themselves; they should just start sending their bought and paid-for elected officials out onto the floor wearing their company logos on their backs. As a result, it’s very unlikely that we’ll see any forward momentum on this issue.



Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates. Please note that the content of some of the HEAL Blogs might be graphic due to the nature of the issues being addressed in it.

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Omnibus Appropriations: The power of the purse

By: Marcus Hopkins, HEAL blogger

Once again, the U.S. government was on the verge of being shut down over disagreements on federal funding levels.  “Nothin’ new,” one might say – we haven’t had a functional legislative branch with much in the way of bipartisanship for close to five years (or some might argue even longer), outside of major legislation that is often passed out of the fear of voter retribution that rarely comes as a result of gerrymandered districting on both sides of the aisle.  In an act of self-preservation, the Republican-led Congress passed a three-day spending bill so that the details could be hammered out on the $1.012-trillion Omnibus spending bill.

For those of you unfamiliar with the term, an Omnibus bill is a large bill that covers a variety of diverse or entirely unrelated topics.  This current bill covers the entire discretionary budget and is comprised of no fewer than 1,582 pages, and largely follows the same conservative trend in government spending that has, in the past, spelled trouble for healthcare and public health initiatives.

Sign from Congressional Appropriations Committee,


The fifteen-day government shutdown that ended on October 16th, 2013, was largely the result of the Tea Party elements within the Congressional Republican Caucus attempting to defund or repeal the Affordable Care Act (better known as “Obamacare”).  When the inaction of our elected officials came to a head and the voters responded with both exasperation and outrage, legislators on both sides of the aisle brought their toys back to the playground and began playing with them, again, in their own separate corners.

Republican appropriators touted their “win” of no new funding for the ACA, and made certain to note that $1 billion was cut from the Independent Payment Advisory Board (once famously referred to by ½-term Alaskan Governor Sarah Palin as the “Death Panel”).  The latter was done to prevent the Secretary of Health and Human Services (currently Kathleen Sebelius) from “raiding” these funds to for the Health Care Insurance Exchanges.

Additional cuts include $10 million from Title X Family Planning funding, which funds many women’s health clinics that provide vital testing services for STDs/STIs, including HIV and HCV.  These clinics primarily serve people with no or low income, two of the highest non-race-related risk groups in the country for contracting both HIV and HCV.

Democratic representatives will be quick to point out that we saw an increase in funding for Alzheimer’s research, as well as a $1 billion increase in funding for the National Institutes for Health (NIH), both of which are fantastic.  But, with every quid, there comes a pro quo, and the cost, in this case, may be higher than we should be expected to pay.

A couple of things should be noted about the current omnibus:

1.)   There are no real serious attacks against programs that are a priority for access to care, and by “real,” I mean, “No funding has been substantially cut that will negatively impact more than a handful of people.”

2.)   While we avoided additional sequestration with this bill, and in fact it was slightly scaled back, it must be noted that this could prove to be problematic, still, for the Ryan White Care Act and the AIDS Drugs Assistance Program (ADAP) – programs upon which co-infected HIV/HCV patients are very likely to depend.

As I’ve noted in previous blogs, RWCA and ADAP are already problematic, as they are not nationally implemented with any consistency from state to state.  The popular saying in the HIV/AIDS community is, “When you’ve seen one ADAP, you’ve seen one ADAP.”

One of the primary issues I have with ADAP is that the money is allocated at the Federal level, is disbursed at the state level, and it’s basically a free-for-all from there.  Each state then has virtual carte blanche to appropriate those funds however they see fit, resulting in a hodgepodge of programs that may meet certain needs, but not others. Fortunately for patients seeking HCV treatment, about ½ of the ADAPs cover some level of access to care and treatment for the disease.

That said, with funding levels largely stagnant and the patient base increasing, it’s difficult to say whether or not state ADAPs will be able to cope, should an influx of new patients occur, particularly states that have not opted in to the Medicaid expansion (most notably in the American South).  The staff at HEAL Blog (myself included) don’t foresee the return of ADAP waiting lists, at the present time, but with every state healthcare agency working overtime to ensure that new regulations are met and coverage is provided under the ACA, we likely won’t know for certain until someone realizes (often too late) that there’s a problem.

The continuing funding issue with Ryan White and ADAP is something that will very likely lead to a lot of vociferous infighting within the HIV/AIDS policy community, as reauthorization of the Ryan White Act is due at any time…which may or may not even be necessary, as there is no sunset provision attached to the law (meaning that no new legislation is required to keep the funding active through the annual congressional appropriations process.  At this time, it’s fair to say that not many people can provide definitive answers about the fate of the RWAC/ADAP programs under the ACA, myself included.

So, where does this leave us as health educators and healthcare providers?  In the same position we’ve been in for several years, now – being asked to provide more services to a growing number of patients with fewer resources.

There are many within the healthcare community who take a look at these numbers and attempt to figure out how we can fit all that we need to accomplish into the ever tightening noose that is the funding game – the Pollyannas of the group who insist that, when handed fewer lemons, we make more watery lemonade.

I am not one of those people.   I am a realist, and the reality is that, if the current trend funding trends continue, as they are likely to do if Congressional seats do not flip one way or the other, we will eventually be asked to do with so little that any efforts will be both negligible and fruitless.

There comes a point when we must begin advocating not only for ourselves, but for those whose voices cannot reach the ears of Congressional leaders more concerned about retaining their seats than they are about doing what is best for everyone in the country.  If we intend to increase awareness and testing within the HCV community, it would behoove us to better leverage ourselves in a manner that will influence the Congressional purse strings.

Disclaimer: HEAL Blogs do not necessarily reflect the views of the Community Access National Network (CANN), but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about Hepatitis-related issues and updates.

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