Hemophilia Financial Planning: Medicaid Preservation, the Gene Therapy Decision, and SNT Strategy

Hemophilia A and B are X-linked bleeding disorders affecting approximately 20,000 Americans — about 1 in 5,000 males for hemophilia A and 1 in 30,000 for hemophilia B. Treatments that were life-shortening a generation ago can now be managed with subcutaneous injections every few weeks. But those treatments carry annual list prices of $200,000–$642,000+, and two FDA-approved gene therapies cost $2.9 million and $3.5 million as one-time doses. For families planning around hemophilia — whether a child, an adult son, or an adult managing the condition themselves — the financial planning calculus revolves around one existential question: how do we keep Medicaid intact so the treatment pipeline remains open?

Why hemophilia financial planning is different from other special needs planning

Most inherited disability planning involves a relatively stable care picture: the diagnosis is made, a treatment plan is established, and the financial task is to fund that plan over a lifetime. Hemophilia presents three compounding complications that require active ongoing financial management:

• Treatment costs are extraordinarily high and rising. Annual factor prophylaxis for severe hemophilia A costs $200,000–$600,000+ before newer therapies. Hemlibra — now the dominant prophylaxis for hemophilia A — has a list price near $500,000/year. Qfitlia (FDA-approved April 2025) lists at $642,000/year WAC. Any interruption in insurance coverage creates an immediate, catastrophic gap in access.
• The treatment landscape is rapidly evolving. Gene therapy arrived in 2022–2023 at $2.9M–$3.5M one-time. Two additional non-factor therapies (Alhemo and Qfitlia) were approved in 2024–2025. Every treatment change creates new insurance, Medicaid, and financial planning questions — especially if a patient switches from prophylaxis to gene therapy and then has diminishing effect years later.
• Inhibitor development can multiply costs by 3–10×. About 25–30% of individuals with severe hemophilia A develop inhibitory antibodies against replacement factor VIII, rendering standard prophylaxis ineffective. Inhibitor patients require bypass therapies or Hemlibra at costs reaching $1M–$2M+/year — and this complication is not predictable at birth.

Treatment landscape and costs: the four pathways

Understanding the treatment landscape is essential before planning, because each pathway has different insurance, Medicaid, and financial implications.

Pathway 1: Factor replacement therapy (traditional prophylaxis)

Standard treatment has long been prophylactic infusions of clotting factor concentrate — FVIII for hemophilia A, FIX for hemophilia B. Standard half-life products are given intravenously 2–3 times weekly; extended half-life (EHL) products allow once-weekly or every-10-day dosing.

Costs are weight-dependent and vary by dosing regimen. A 180-pound adult with severe hemophilia A will consume approximately twice the factor of a 90-pound teenager. Actual reimbursed amounts differ substantially from list price due to specialty pharmacy contracts, PBM rebates, and Medicaid fee schedules — but list prices determine the financial exposure for the uninsured or underinsured.

Pathway 2: Non-factor subcutaneous therapies

A major shift in hemophilia care began with emicizumab (Hemlibra), which bridges activated factor IX and factor X to restore clotting — bypassing the missing FVIII entirely. It is given subcutaneously (weekly, every-two-weeks, or monthly) and has dramatically simplified prophylaxis for hemophilia A. Two additional non-factor agents entered the market in 2024–2025:

Pathway 3: Gene therapy (one-time, $2.9M–$3.5M)

Two FDA-approved gene therapies represent a potential functional cure, though long-term durability beyond 5 years is not yet fully established:

• Hemgenix (etranacogene dezaparvovec) — FDA approved November 22, 2022; CSL Behring/uniQure; for adults with hemophilia B (FIX deficiency); $3.5M one-time dose. Delivers a functional FIX-Padua gene variant via AAV5 vector. Phase 3 HOPE-B data: 54% reduction in annualized bleeding rate vs. prior prophylaxis; 94% of patients eliminated routine prophylaxis at 26 weeks post-infusion.⁴
• Roctavian (valoctocogene roxaparvovec) — FDA approved June 29, 2023; BioMarin; for adults with severe hemophilia A without pre-existing AAV5 antibodies; $2.9M one-time dose. Phase 3 GENEr8-1 data: 86% reduction in annualized bleeding rate; 83% of patients on prophylaxis at baseline eliminated infusions in Year 1. Factor VIII activity declines over time — long-term durability data through Year 5 are emerging.⁵

Pathway 4: Bypass therapy for inhibitor patients

Patients who develop inhibitory antibodies against FVIII can no longer use standard factor VIII replacement. Bypass agents work through alternative clotting pathways:

• aPCC (FEIBA, Takeda): Activated prothrombin complex concentrate; event-driven or prophylactic; prophylactic dosing can reach $700K–$1.5M+/yr at list price.
• NovoSeven RT (rFVIIa, Novo Nordisk): Recombinant activated factor VII; used for breakthrough bleeds and surgical coverage; costs per acute episode can reach tens to hundreds of thousands of dollars.
• Hemlibra: Approved for inhibitor patients since 2017; bypasses FVIII entirely via a different mechanism; now the preferred prophylaxis for most inhibitor patients because of subcutaneous administration and more predictable hemostasis vs. IV bypass agents.

The gene therapy financial decision: Hemgenix and Roctavian

Gene therapy for hemophilia is a financial planning event of exceptional complexity. A $3.5M one-time payment is not simply a large bill — it raises fundamental questions about insurance architecture, Medicaid eligibility, benefit durability, and what happens if the therapy diminishes.

Who pays for gene therapy?

• Commercial insurance: Many plans cover Hemgenix and Roctavian with prior authorization at a designated Hemophilia Treatment Center. Outcomes-based contracts — where manufacturers rebate a portion of cost if patients return to prophylaxis — are in place with major commercial payers. For a person in an employer plan, the out-of-pocket maximum (typically $9,100/year in 2026 for an ACA-compliant plan) caps patient financial exposure even on a $3.5M therapy — if coverage is authorized.
• Medicaid: Coverage for hemophilia gene therapy varies by state. Some state Medicaid programs cover Hemgenix and Roctavian; others have restricted access or lengthy prior authorization requirements. CMS has encouraged states to adopt outcomes-based payment models for cell and gene therapies through the CMMI PACE model. Patients on SSI-linked Medicaid pursuing gene therapy must confirm their state's coverage status before proceeding — losing Medicaid after gene therapy would leave the patient without coverage if the effect diminishes and prophylaxis restarts.

What happens if the effect wanes?

Gene therapy durability is measured in years, not decades. If a patient receives Hemgenix at age 40 and factor IX levels decline to sub-therapeutic levels at age 50, they must restart prophylaxis. The critical question: will Medicaid or insurance still be in place at age 50? A patient who pivoted entirely to private insurance for gene therapy access and then lost coverage cannot simply return to Medicaid if their assets exceed the SSI resource limit ($2,000). This argues strongly for maintaining a pathway to Medicaid access — particularly Section 1619(b) if working — throughout the years following gene therapy, even when prophylaxis is suspended.

The inhibitor complication: when costs spike to $1M+/year

Inhibitor development — the immune system producing antibodies against exogenous factor VIII — affects approximately 25–30% of individuals with severe hemophilia A, with smaller rates in hemophilia B.¹ Inhibitors are most commonly detected in childhood during the first 20–50 exposure days to FVIII. They may also arise in adults previously tolerant to factor (acquired hemophilia A).

The financial impact is immediate and severe:

• Standard FVIII prophylaxis becomes ineffective and must be stopped
• Bypass therapy (aPCC or NovoSeven) replaces factor — at $700K–$2M+/yr for routine prophylaxis
• Immune tolerance induction (ITI) — high-dose daily FVIII to eradicate the inhibitor — takes 1–5+ years at $1M+/yr before tolerance may be achieved
• Hemlibra is typically started as prophylaxis during ITI and continued if ITI fails

The inhibitor complication cannot be predicted or prevented with certainty, which is why SNT sizing for severe hemophilia A must incorporate an inhibitor scenario even if prophylaxis is currently working well. A patient whose Medicaid is intact has the bypass therapy and ITI covered; a patient without Medicaid faces costs that no private savings can sustain.

SSDI qualification for hemophilia

Blue Book 7.08: why it rarely applies to well-managed patients

SSA evaluates hematological disorders under Section 7.00 of the Blue Book. The relevant listing is 7.08 — Hematological disorders with repeated complications, which requires three or more hospitalizations within a consecutive 12-month period, each lasting at least 48 hours and at least 30 days apart.⁶

For a patient whose hemophilia is well-managed on Hemlibra or Qfitlia, this criterion is almost never met. Modern non-factor therapies have reduced hemophilia-related hospitalization rates dramatically. An adult with severe hemophilia A on Hemlibra may have no hemophilia-related hospitalizations in a year — and yet requires $500,000/year in treatment to prevent the bleeds that would otherwise cause those hospitalizations. The Blue Book listing captures the pre-modern-therapy picture; it does not capture the financial reality of contemporary hemophilia management.

Hemophilia is not on SSA's Compassionate Allowances (CAL) list. Even severe cases require the standard 3–6 month evaluation process rather than the 7–10 day fast-track available for conditions like ALS, Rett syndrome, or Angelman syndrome.

The RFC approach: hemophilic arthropathy

The more realistic SSDI pathway for adults with hemophilia is through the residual functional capacity (RFC) assessment, specifically for hemophilic arthropathy — joint damage caused by repeated hemarthroses (bleeding into joints).

Chronic joint bleeding causes progressive synovitis, cartilage destruction, and joint deformity, primarily in ankles, knees, elbows, and hips. Adults with severe hemophilia who experienced inadequate prophylaxis in childhood or developed inhibitors often have severe hemophilic arthropathy with:

• Limited range of motion in multiple joints
• Chronic pain requiring consistent management
• Gait disturbances requiring assistive devices
• Post-surgical limitations following joint replacement

Severe hemophilic arthropathy may qualify under Blue Book Listing 1.18 (other musculoskeletal disorders) or, more commonly, through an RFC finding that the individual cannot sustain even sedentary work across a full workday. A hematologist's documentation of joint disease severity combined with radiology (X-rays showing joint space narrowing, osteophytes, subchondral cysts) is the foundation of this claim.

Section 1619(b): the most important protection for working adults

For adults with hemophilia who work — and many do, particularly on modern non-factor prophylaxis — Section 1619(b) Medicaid protection is the central financial planning tool. It allows an SSI recipient to keep Medicaid even after earned income rises above the SSI break-even level, as long as gross income remains below the state-specific 1619(b) threshold (typically $30,000–$80,000/year, depending on state and individual Medicaid costs).⁶

The logic is straightforward: a working adult with hemophilia who earns $45,000/year cannot afford Hemlibra ($500,000/year) or factor prophylaxis ($300,000+/year) without Medicaid or comprehensive insurance. Section 1619(b) keeps the Medicaid door open even after the monthly SSI check stops, as long as income stays below the threshold. This is the mechanism that allows hemophilia to be compatible with full employment rather than a reason to stay unemployed to preserve coverage.

The Section 1619(b) threshold is individualized and factors in what Medicaid would need to spend on the individual's treatment. Patients on expensive treatments have higher thresholds — a hemophilia patient on Hemlibra at $500,000/year may have a 1619(b) threshold well above $50,000 because SSA accounts for that Medicaid cost in the calculation.

GINA and insurance timing for hemophilia families

The Genetic Information Nondiscrimination Act (GINA) protects against genetic discrimination in health insurance and employment — but explicitly does not cover life insurance, disability income insurance, or long-term care insurance.

Carrier females: the life and LTD insurance decision

A female who is a carrier of the hemophilia gene (obligate carrier or confirmed by genetic test) has no GINA protection against a life insurer or disability insurer using that genetic status to decline coverage or charge elevated premiums. Most carrier females have normal or near-normal factor levels and are asymptomatic — but approximately 10–25% of carriers have factor activity below 50%, putting them in the mild hemophilia range with bleeding symptoms. Even an asymptomatic confirmed carrier may face life and LTD insurance discrimination once genetic status appears in her medical record.

The action point: Carrier females who have not yet had formal genetic confirmation — those who are obligate carriers by family history but have not had a genetic test — should secure life insurance and long-term disability coverage before pursuing carrier testing or before carrier status is documented in the medical record. Once it's in the record, insurers can and do use it.

Males with hemophilia: the insurance timing problem

Males with hemophilia A or B typically have a clinical diagnosis from childhood based on bleeding symptoms — the genetic test is not the problem; the clinical diagnosis is already in the record. Standard individual life and disability underwriting will rate or decline based on the hemophilia diagnosis. A young adult male with severe hemophilia A on Hemlibra may still be declined for new individual life insurance or rated significantly above standard.

The practical strategy: employer group life insurance and group LTD provide meaningful coverage without individual medical underwriting. These should be maximized before considering any individual policies. Specialty high-risk insurers can place life coverage for some individuals with hemophilia — working with a broker who specializes in high-risk impairments is essential.

X-linked inheritance: planning for the family tree

Hemophilia A and B are X-linked recessive disorders. The inheritance pattern creates specific intergenerational planning considerations:

• All daughters of a male with hemophilia are obligate carriers — they receive the affected X chromosome. If financial planning focuses only on the current generation, daughters' future insurance access, GINA risks, and own carrier status management may be overlooked.
• Sons of carrier females have a 50% chance of having hemophilia — and 50% of being unaffected. Sons of males with hemophilia are not affected (they receive the Y chromosome from their father).
• Carrier daughters have a 50% chance of having an affected son — extending the planning horizon to grandchildren and great-grandchildren.

For grandparents building estate plans, this inheritance pattern matters for trust structure. A testamentary SNT benefiting a grandchild should anticipate the possibility that multiple grandchildren (from carrier daughters) may eventually need similar planning support. A pooled trust or dynasty trust approach may be appropriate for larger multi-generational hemophilia families. At minimum, every estate plan in an extended hemophilia family should route any potential inheritance through an SNT — not directly to a beneficiary on SSI — and should name alternate beneficiaries for the trust in the same intergenerational framework.

Hemophilia Treatment Centers: what they cover and SNT implications

The United States has approximately 140 federally-funded Hemophilia Treatment Centers (HTCs) that provide comprehensive multidisciplinary care at no direct cost to patients — regardless of insurance status or ability to pay. HTCs are funded through the HRSA Maternal and Child Health Bureau. HTC services include:

• Comprehensive hematology team (hematologist, nurse specialist, physical therapist, social worker, psychologist)
• Laboratory monitoring (factor levels, inhibitor titers, annual joint assessments)
• Factor product dispensing (in many HTCs) at no patient cost regardless of insurance
• Orthotics and physical therapy for hemophilic arthropathy
• ITI management for inhibitor patients
• Genetic counseling and carrier testing coordination for families

SNT and ABLE implications: An HTC may not be locally accessible. Families in rural areas often travel quarterly or annually for comprehensive evaluations. Transportation and lodging costs for HTC visits are qualified SNT distribution categories — not ISM, because travel to medical facilities is supplemental support, not food or shelter. They also qualify as Qualified Disability Expenses (QDEs) under ABLE, specifically the health, prevention, and oversight categories. An ABLE account with $1,000–$3,000 designated for HTC travel annually is a practical planning tool for adults managing their own care while working under Section 1619(b).

SNT distribution language for hemophilia

A Special Needs Trust for a hemophilia beneficiary should include distribution language that specifically addresses the treatment landscape and the inhibitor contingency. Key categories to authorize explicitly:

• Insurance premium cost-sharing: Medicare Parts B and D cost-sharing, Medigap premiums, marketplace plan premiums, and COBRA premiums during employment transitions — all valid SNT distributions that are not ISM. These preserve access to the treatments that Medicaid or private insurance funds.
• Non-factor therapy and factor cost-sharing: Copays, deductibles, and any out-of-pocket cost on Hemlibra, Qfitlia, Alhemo, factor concentrate, or bypass therapy that insurance or Medicaid does not fully cover.
• HTC travel and lodging: Transportation, parking, lodging, and meal expenses specifically for medical appointments at designated Hemophilia Treatment Centers. These are not ISM and are clearly supplemental in nature.
• Orthopedic and assistive equipment: Custom orthotics, ankle-foot orthoses (AFOs), knee braces, power or manual wheelchairs if mobility is compromised by hemophilic arthropathy, and home modifications (grab bars, shower chair, stair lift) related to joint disease.
• Physical therapy: Ongoing joint rehabilitation for hemophilic arthropathy, including gym membership or home exercise equipment prescribed as part of a physical therapy plan.
• Gene therapy authorization clause: Explicit authorization to apply trust funds toward out-of-pocket costs, copays, or insurance deductibles associated with Hemgenix, Roctavian, or future-approved hemophilia gene or RNA therapies. This prevents trustee uncertainty about whether a $9,100 ACA deductible on a $3.5M therapy is a proper trust distribution.
• Inhibitor contingency reserves: Explicit authorization for bypass therapy cost-sharing, ITI-related expenses, and additional infusion supplies if inhibitors develop or re-emerge after a period of tolerance.

SNT sizing for hemophilia: four scenarios

ABLE accounts for adults with hemophilia

ABLE accounts are a practical tool for adult hemophilia patients who work and receive SSI. Key considerations:

• Eligibility: The ABLE Age Adjustment Act (effective January 2026) extended eligibility to individuals whose disability onset was before age 46. For most hemophilia A and B patients — diagnosed at birth or in early childhood — the original age-26 onset criterion was easily met; the expansion is relevant for adults with milder hemophilia diagnosed later in life.
• 2026 limits: $20,000/year from all sources; working beneficiaries may contribute an additional $15,650 via ABLE-to-Work.
• SSI resource exclusion: Up to $100,000 in an ABLE account is excluded from the SSI $2,000 resource limit, enabling savings accumulation without losing benefits.
• QDE uses for hemophilia: Medical copays and deductibles, HTC transportation, infusion supplies, assistive equipment for joint disease, physical therapy, insurance premiums, and adaptive recreation.
• The ABLE + Section 1619(b) combination: For a working adult who earns above the SSI monthly threshold but below the 1619(b) state threshold, both tools work together. ABLE builds savings without affecting the SSI resource limit; 1619(b) keeps Medicaid intact for the treatment that costs more per year than most households earn.

Von Willebrand disease: brief note

Von Willebrand disease (VWD) is the most common inherited bleeding disorder, affecting approximately 1 in 100 Americans — though most have Type 1 (mild) and manage with desmopressin (DDAVP) and antifibrinolytics at low cost. Type 3 VWD (severe) has a treatment profile similar to moderate hemophilia A, with VWF/FVIII concentrate costs running $100K–$300K+/year for regular prophylaxis. For families with severe VWD, many of the same SNT and Medicaid-preservation principles apply — particularly Section 1619(b) for working adults whose VWF therapy is Medicaid-covered.

Priority checklist for hemophilia families

1. Confirm Medicaid coverage status and 1619(b) threshold if working — know the exact state income threshold above which Medicaid would be lost; plan employment and earned income with this number in mind; contact SSA for your individualized threshold
2. Review SNT distribution language for gene therapy authorization and inhibitor contingency — an SNT drafted before 2017 almost certainly does not explicitly authorize Hemlibra, Qfitlia, or gene therapy; the trustee needs clear authority before a $9,100 deductible becomes an issue
3. Open an ABLE account if on SSI and working — $20,000/year contributions, $100K SSI exclusion, flexible QDE spending on HTC travel, copays, assistive equipment; the ABLE + 1619(b) combination is the most powerful protection for working hemophilia adults
4. Maximize group life and LTD insurance through employer — no individual medical underwriting; choose the maximum face value and any buy-up option at open enrollment
5. For carrier females: secure life and LTD insurance before genetic testing enters the medical record — GINA does not protect against life/LTD discrimination; the window to get standard-rate coverage closes once carrier status is documented
6. Identify and connect with the nearest Hemophilia Treatment Center — comprehensive multidisciplinary care at no direct patient cost; find your HTC at hemophilia.org/HTC-locator; quarterly or annual visits are the standard of care even for well-managed patients
7. Model the gene therapy decision with a special needs financial advisor — Medicaid continuity after therapy, what happens if effect wanes at year 8, outcomes-based rebate implications, state coverage status, and the resource limit interaction all require individual modeling
8. Update grandparent and sibling estate plans — all bequests, IRA beneficiary designations, and life insurance must name the SNT not the individual directly; carrier daughters of affected males need their own estate plan review; see the inheritance planning guide
9. Add inhibitor scenario to SNT sizing — even if prophylaxis is currently effective, the worst-case inhibitor trajectory adds $300K–$1M to the SNT target and should be modeled before you lock in a funding strategy
10. Apply for HCBS physical disability waiver if joint disease limits activities of daily living — HCBS waivers fund personal care, in-home support, and assistive technology; waitlists can be long; apply early regardless of current severity

Sources

1. NCBI Bookshelf — Pharmacoeconomic Report on Emicizumab (Hemlibra). Reference for inhibitor development rates in severe hemophilia A (~25–30% of patients) and Hemlibra's role in inhibitor and non-inhibitor hemophilia A management. Hemlibra annual list price approximately $492,000/year for average-weight adult (initial loading dose approximately $38,000 additional in year one). Genentech/Roche; subcutaneous bispecific antibody bridging activated FIXa and FX.
2. Novo Nordisk Press Release — FDA Approves Alhemo for Hemophilia A/B Without Inhibitors (August 2025). Alhemo (concizumab-mtci) expanded indication for hemophilia A or B without inhibitors, FDA approved August 2025. Initial FDA approval December 2024 for patients with inhibitors. Once-daily subcutaneous injection; TFPI (tissue factor pathway inhibitor) mechanism. Phase 3 explorer7 (inhibitors): 86% reduction in treated bleeds; explorer8 (without inhibitors): 79% reduction in annualized bleeding rate for hemophilia B and 86% for hemophilia A.
3. Alnylam Pharmaceuticals Press Release — FDA Approves Qfitlia (fitusiran) for Hemophilia A or B (April 2025). Qfitlia (fitusiran) approved by FDA for hemophilia A or B with or without inhibitors; WAC $642,000/year; first siRNA (RNAi) therapeutic for hemophilia; subcutaneous injection every 2 months; targets antithrombin to restore clotting balance; Sanofi/Alnylam collaboration.
4. FiercePharma — CSL and uniQure's Hemophilia B Gene Therapy Crosses FDA Finish Line at $3.5M (November 2022). Hemgenix (etranacogene dezaparvovec) FDA-approved November 22, 2022 for adults with hemophilia B; $3.5M list price; one-time IV infusion delivering FIX-Padua gene via AAV5; CSL Behring/uniQure. HOPE-B Phase 3: 54% reduction in annualized bleeding rate; 94% of patients eliminated routine prophylaxis at 26 weeks. Outcomes-based contracts available with payers.
5. Managed Healthcare Executive — FDA Approves $2.9 Million Gene Therapy for Hemophilia A (June 2023). Roctavian (valoctocogene roxaparvovec) FDA-approved June 29, 2023 for adults with severe hemophilia A without pre-existing AAV5 antibodies; $2.9M; BioMarin Pharmaceutical. GENEr8-1 Phase 3: 86% reduction in annualized bleeding rate; 83% of patients on prophylaxis eliminated infusions in Year 1. Outcomes-based reimbursement program with payers; factor VIII activity declines over time — long-term durability data through Year 5 emerging.
6. Social Security Administration — Blue Book Listing 7.00: Hematological Disorders (Adult). Section 7.08 covers hematological disorders with repeated complications requiring hospitalization: 3 or more hospitalizations in 12 consecutive months, each ≥48 hours and at least 30 days apart. For individuals with managed hemophilia who do not hospitalize frequently, RFC assessment for hemophilic arthropathy is the alternative qualification pathway. Hemophilia is not on SSA's Compassionate Allowances list. Section 1619(b) reference: SSA.gov SSI Work Incentives page — allows SSI recipients to retain Medicaid after income exceeds SSI break-even if below state-specific threshold.

Treatment cost estimates reflect 2025–2026 WAC (wholesale acquisition cost) list prices; actual reimbursed amounts differ due to specialty pharmacy contracts, Medicaid fee schedules, manufacturer rebates, and patient assistance programs. Hemlibra annual WAC: ~$492K–$564K/yr (Genentech/Roche; NCBI source). Qfitlia WAC: $642,000/yr (Alnylam press release, April 2025). Hemgenix: $3.5M one-time (CSL/uniQure; FDA November 2022). Roctavian: $2.9M one-time (BioMarin; FDA June 2023). Alhemo: FDA approved December 2024 (inhibitors) and August 2025 (without inhibitors); WAC not publicly confirmed. SSI Federal Benefit Rate: $994/month (2026). SSI resource limit: $2,000 individual (unchanged since 1989). ABLE age-of-onset eligibility: disability onset before age 46 (ABLE Age Adjustment Act, effective January 2026). ABLE contribution limit: $20,000/year (2026). ABLE-to-Work additional contribution: $15,650 (2026). Gift tax annual exclusion: $19,000/donor (2026). GINA does not protect against life insurance, disability insurance, or long-term care insurance discrimination. HTC locator: National Hemophilia Foundation at hemophilia.org.